Living With Hypothyroidism

Friday, 23 August 2013

I've been a bit quiet the last few months, so here is what I've been up to so far.

T3 has been working great for me. I can find it in one of the local pharmacies very cheap. In the end I solld the Cytomel brand to someone else and I continued taking the local weaker brand. It was really working fine for me, no complaints there (except I had to remember to take it 3 times a day, but after a few weeks it became natural to just glance at the clock at the right time and take the pills).

What was worrying me though was that it's only T3 and not the whole spectrum of thyroid hormones that the thyroid gland produces. That's why I actually went on and bought 2 year's supply of NDT (brand Thiroyd) from a trusted source. The natural dessicated thyroid gives exactly what our own thyroid makes, namely T4, T3, T2, T1 and calcitonin. While T3 alone is already way better than T4, NDT is what we really need.

Hence the last couple of weeks I started on switching from T3 only to NDT. Basically this is how I do it.

I used to take 3/4 of a pill of T3 (18.75 mcg) in the morning at around 8 am. Then half a pill (12.5 mcg) around 1 pm and another half pill at about 6.30 pm.

To safely switch from T3 to NDT I need to replace T3 with NDT very slowly and only one dose at a time. I tried to start with the morning dose but I really felt bad that day. I guess it was because the NDT will build up the reserve of T4 in the body, but it needs weeks for it to happen. By removing a bit of my T3 and replacing with a bit of NDT, I literally got less T3 for that morning than usual, and that really screwed with my system.

So the next day I started with my evening dose. I would drop 6.25 mcg of T3 (a quarter of a pill) and introduce 30 mg of NDT. Do this for a week, after which drop the 6.25 mcg I was still taking, so now I would only be taking the half pill of NDT.

After about a week I started to work on my lunch dose, the same way as the evening dose. However I felt a bit hypo (I guess I still didn't have enough T4 in my body to convert to T3 on its own), so I actually went with half a pill NDT and also reintroduced the half pill T3 as well.

Now it's yet another week and at this time I could drop the 6.25 mcg for the lunch time dose and, so now I'm only taking half a pill NDT and quarter a pill T3 as I should have done last week, but couldn't. So far now it seems to work fine.

The next week I'll drop the bit of T3 from my lunch dose and the only T3 I'll be taking will be the morning dose.

Right now I'm feeling pretty good. No problems with bowel movements (I do take the magnesium pills every night), the hair stopped pretty much from falling (only a few strands when I wash my hair, it's highly bearable), however I still have dry skin on my heels and feet, so that's something I have to work on. But otherwise I can't compare myself to how I was feeling say last year about this time, sickly all the time.

In the meantime I've also started my journey on detoxing various dangerous chemicals from my body (bromide, fluoride and all that) and started a iodine protocol that I'll be talking about in a next post.

Saturday, 9 March 2013

Today is the first day to take T3 only. For the last 2-3 weeks I've reduced the thyroxine from 50 mcg to 25 mcg (took only half a pill at a time) and introduced T3 as well as 25 mcg twice a day. Now the T3 I have (made by Uni Pharma) in Greece is very weak, based on this post at Thyroid-RT3. However this is what I currently have, and while I have ordered Cytomel from the online source that gets quietly passed around between people who want to start getting T3, until the pills arrive, I'll have to take what I have.

However it's good because after reading what I now call the 'Bible of living with T3', the book by Paul Robinson called Recovering with T3, I know now that I have to first clear the synthetic T4 from my body before really working on properly dosing the T3. So the weak T3 that I'm taking now will be just enough to keep me from having heavy hypothyroidism symptoms while the T4 clears out. I love this book and it is at my bedside table, to pick up and read the relevant parts throughout my journey.

So right now the 'weak' T3 will be taken 3 times in same size dozes. I won't worry about taking too much, because, like I said, it's very weak and and this is just to keep me from becoming very hypo. I will adjust and work on finding my personalized dosage once Cytomel comes through the post (in a couple of weeks), which will give the synthetic T4 time to nicely clear (at least most of it) from my body.

I'm taking equal doses of T3 of 12.5 mcg at 8 am, 12 pm and 5 pm. Also started to take my basal temperature, and will do initially 3 times throughout the day for a particular reason. I want to make sure that I don't have adrenal problems. While I can't find in my parts of the world the 24 hrs cortisol saliva test, taking the temperature at various times of day for a few days (always at the same time) and then averaging the data will give me a glimpse into whether the adrenals function correctly or not. If there are fluctuations and the temps are not steady, then I might have a problem, and might be really worth looking into it.

Also taking the temperature has the role of checking for signs of being hypo - lower temps do have the indication of hypothyroidism (especially when I do feel cold and there is no reason to feel that way).

This morning I took my T3 at 8 am and took my temperature at 8.15. It was 36.7 C (98.06 F), which is quite ok. Will take my temps every 3 hours, 3 times a day.

Friday, 11 January 2013

One of the main problems I'm struggling is constipation, and it's especially bad now since I'm hypo. Based on feedback from other people who have this problem (and also confirming with the gastroenterologist), I started to take magnesium and Vitamin C, and like I mentioned in an earlier post, I'm going like clockwork.

About 3 days ago I stopped to take Cytomel (T3) because I was thinking that when I'll have in February the blood tests done, I don't want the results to be skewed with the addition of T3. However much to my surprise, again I started to have constipation from the very next day, even though I was still taking the magnesium and Vitamin C regularly. At the time I put it on 'hm, magnesium doesn't work as it should be'.

Yesterday, however, I remembered that I was no longer taking T3 and started to think...what if? So I decided to take T3 again, so I cut a pill in half, and took 12.5 mg sublingual, and of course as usual, in the evening I took my dose of magnesium and Vitamin C before going to bed.

This morning, after breakfast, finally I had another bowel movement, without any problems, straining and whatnot.

Then I started to think, indeed my body does need the active T3, because without it, the symptoms of hypothyroidism came back with a vengeance, despite me taking magnesium. So then I figured, this is what people talk about when they say that before the blood test became so important for doctors, they were treating people with hypo based on their symptoms, to make them feel better, and not merely relying on a blood test which might imply that the results are 'normal', the thyroid is functioning 'normal', even when the person is feeling like crap.

So from now on I'll keep on taking T3 and we'll just see what the blood results will show when I'll have them done. Feeling better means more to me than avoiding skewed results in some blood tests that might not even be meaningful for my treatment.

Wednesday, 9 January 2013

For about a week now I've started taking Vitamin C supplements along with Magnesium to encourage bowel movement. When you're hypo, constipation is a major symptom, that can be quite debilitating at times. I've read online and also talked with lots of other folks who have this problem who said that Vitamin C and Magnesium taken together really help. So I gave it a try.

Right now I'm taking a vitamin C supplement 1000 mg around 11 am, and one in the evening after 8 pm, that one taken with a magnesium pill. The next day let's just say that bowel movement is like 'clock work'.

In the meantime another problem I'm struggling with these days is constant lower abdomen pain. It started also about 2 months ago, so I am almost certain that it's a secondary symptom related to hypothyroidism, specifically related to constipation.

So I went yesterday afternoon to my gastroenterologist for a checkup, and while discussing with him about my symptoms, I mentioned in passing that I'm taking Vitamin C and magnesium. While he totally agreed with the magnesium, he told me to avoid taking too much vitamin C and especially daily because too much is not good for the body. He said that it is only really recommended for people with serious immune system disorders. So there's that. I did want to say that hypothyroidism is related to the immune system, but I left it at that.

Coming back home, I talked it through with some folks on the STTM Facebook group, and many said that their doctors told them to take even more than I'm taking, and that Vitamin C supplements are safe. So now I'm utterly confused. How much vitamin C is too much and how much should I take daily?

Going online, I made some research, and let's just say that the results are conflicting at best. There are some good cases on both sides of the argument. There are those who say that Vitamin C is even used for shrinking cancer cells (albeit taken intravenously). On the other hand, there are those who say that while Vitamin C is an antioxidant, it has also dangerous effects which are usually not measured, so they go unnoticed until the damage is done. The allegations are serious enough that I'm really hesitant now...what do I do?

So let's see some research that I found for and against consuming too much Vitamin C in form of Vitamin C supplements

The Linus Pauling Institute has a very good article on Vitamin C, on how much is good for people of various ages (starting from infants to elderly), what types of illnesses it can help with and what problems might bring along. Worth a read: http://lpi.oregonstate.edu/infocenter/vitamins/vitaminC/

The Office of Dietary Supplements says that: "Vitamin C has low toxicity and is not believed to cause serious adverse effects at high intakes. The most common complaints are diarrhea, nausea, abdominal cramps, and other gastrointestinal disturbances due to the osmotic effect of unabsorbed vitamin C in the gastrointestinal tract." It also gives a good overview of what Vitamin C is, what the recommended doses are, what it can help with and a lot of other information worth reading: http://ods.od.nih.gov/factsheets/VitaminC-HealthProfessional/

The University of Maryland mentions in an article that: Serious side effects from too much vitamin C are very rare, because the body cannot store the vitamin. However, amounts greater than 2,000 mg/day are not recommended because such high doses can lead to stomach upset and diarrhea.

I found several other respectable resources with real research under their belt for both sides of the story. I could go on and on posting more links, since research is being done on a regular basis. However I haven't come across a single resource that clearly and unequivocally proved that consuming too much Vitamin C can have disastrous effects.

Also considering how many people all over the world are taking Vitamin C in various doses, some simply to ward off cold and flu, others to help with health issues and symptoms such as constipation and many others, and they're still here, years after, to tell about it, I do believe that:

when a person has a real reason for taking these vitamins, where not taking it could cause real problems (try to live without a bowel movement for more than 5 days and then we'll talk again)

based on how thousands of people (including me) feel when taking it as opposed to when leaving it out from their diet

considering the fact that just as Vitamin C is not produced by the body, the excess is expelled in the urine just like Vitamin B

vitamin C does help more than harm. If too much is taken, the symptoms will make themselves known quite fast anyway, so the dosage can be reduced to a 500mg pill or less.

For now I will continue taking 1000-2000 mg a day until proven - truly proven that it is indeed absolutely dangerous to take it in such high amounts.

I've been also asked why I'm not eating more foods that contain Vitamin C, such as citrus fruits, tomatoes and so on. Well, I am also suffering from GERD, and for me eating anything with too much acid in it is truly painful. So far taking Vitamin C orally hasn't proved to cause problems related to gastritis and GERD.

Monday, 7 January 2013

The more I learned about what I need and what I am still missing from my treatment, the more I realized that T3 is a necessary additive to my regular regiment. Thankfully I found T3 pills at the local pharmacy (pills made in Greece, see image above) - the pharmacist only has a couple of boxes that he orders specifically for 2-3 people who actually are aware of T3 and are brave enough to order it), so he added me to the list as well.

About 4 days ago I started to take T3. The pills I got from the pharmacy are 25mcg, but for me this is quite a big dose to start from the beginning, so I broke the pill in 3 and took 8.3 mcg per day around 2 pm. Basically Cytomel should be started on a low dose and then slowly increased until the optimal level is reached.

The first day I took it, I felt simply great. I had more energy than in a long time - this is when I realized just how debilitating hypothyroidism can be! Without realizing over time I became a recluse, almost anti-social, and my energy level was really bad as well. I didn't feel like doing any work at all, I would just stare at my computer screen for a long time without actually doing anything meaningful. And sadly, because has happened gradually, I ended up believing that this is normal, it's just 'my character'.

Well that day proved that it isn't! I got more work done than in a long long time. I had more energy, was more chatty, I simply felt great.

So I've decided that this is what I'll start with: thyroxine at 7 am with water, after which I would sleep one extra hour (thyroxine need at least 30 minutes to one hour or even more to be taken before food, so it ends up being absorbed in the body). And around 1-2 pm a quarter pill T3, which would start work about 1-2 hours after, so that by the time my energy level is most down and I'm most sluggish in the day, the effect would kick in, almost like caffein. Not because it is an energy booster, but because it gives extra T3 hormones to the body that it so much needs.

The next two days were kind of uneventful in terms of T3, I am now taking it around 1 pm sublingual, so it doesn't interfere with lunch.

Today, however, I woke up in the morning very sleepy, sluggish and quite 'out there'. I think I'm getting a cold because my throat is acting up the last few nights as well, and I'm sneezing quite often in the day. The whole morning I've been quite bad, hardly working at all, so at 1 pm I decided that I'll up my dose of T3 to half a pill, 12.5 mcg. Anyway this dose has to be upped after about a week and properly adjusted until I get the optimal amount of T3 in my body, I just did it 2 days earlier.

Right now as I'm writing this, I feel much better. Still a bit sleepy, but much less than just a few hours before. I actually wanted to go to sleep after lunch, but in the end I might just skip napping altogether.

I will stay on 12.5 mcg for now and we'll see how it goes. If I get too hyper, then I'll go back to 8.3 mcg.

Update: Well, today overall was a rather crappy day. I did go to sleep for about 2 hours in the afternoon, and overall my energy level was very down, and did hardly any work. I just couldn't focus, bring up the energy to do anything meaningful with my time. I felt like somebody gave me some sleeping pills and left me to my devices. Hopefully tomorrow will be a better day.

Once I knew I have hypothyroidism, I started to search online through blogs, articles, medical journals, forums and groups, to learn more about what I'm dealing with. Afterall if it's true that I am hypo, this is something that I have to live with for the rest of my life.

One of the places that I ended up during my research is a site called Stop The Thyroid Madness by Janie, a person who basically went through a lot of pain, distress and problems until she found something that actually works. It took her years to get better, years to bounce from doctors to doctors who simply didn't understand her problems, or simply sticking to the traditional methods of treating hypothyroidism, which leaves around 80% of the people still suffering with the same symptoms, despite their blood tests showing 'normal' results.

I started to read this site, I think I read pretty much every article and blog post in there (and it's a big site), and through this site I learned about the Facebook Group STTM which has currently over 8000 folks, all trying to find a proper treatment for them that actually works.

One thing I've learned in my effort to understand more about being hypo and what it all entails, is that in most cases taking thyroxine is simply not enough. One should at least complement it with T3 (Cytomel), or even better, change to NDT (natural dessicated thyroid).

I'm not really the best to explain it scientifically why, I'm still learning as I go along, and I'm still at the beginning of my journey, but the gist of it is this: thyroxine pills are basically storage hormones which convert to the active T3 that is so important for the body to function at its best. However for many people with hypothyroidism this conversion doesn't really happen, and we end up lacking in precious T3, which brings with it a lot of symptoms of hypothyroidism that won't go away. So supplementing with T3 pills can go a long way towards feeling much better, and if there is a chance to change to NDT, it would be ideal, since it contains both T3 and T4 hormones right off the bat (see image below). Plus it's natural, unlike the synthetic pills thyroxine and Cytomel.

(image source Wikimedia Commons)

Right now I'm too chicken to get onto NDT (plus I don't think I could find it in our parts of the world), so I'll stick with thyroxine and Cytomel for the time being and see how I feel.

One of the things I've learned since starting on my self-recovery journey is that there is a whole range of endocrinology lab tests that pointpoint exactly what is going on with the thyroid. Doing FT4 and TSH only is simply not enough.

So I added a few other blood tests to the list that my new doctor put down on paper, and when I will go in February to have the blood tests done, I will make sure these will also be included:

For over a half year now I've been having some very common health related symptoms, which taken separately could mean nothing really, but once I started to look into a relation between them, it raised some serious red flags.

For example, I started to get dry skin, especially on my heels and toes. While the heels are always dry in summer due to walking barefoot and whatnot, this was getting a bit too much. I had really bad white patches on top of my big toes, which was quite ugly.

At about the same time I started to feel tired, sluggish, with a strong lack of energy for even the most mundane of things, and my memory seemed to sort of go away - especially when it comes to remembering names of actors, or words - and not once I found myself saying a completely different word that I actually wanted to say when talking with people. Just the wrong word would come out of my mouth and I was left wondering why would I even say that word. Or why I couldn't remember the name of a very famous actor that never failed me before.

Then at about the same time I started to have some real bad constipation issue. As I've been plagued by constipation all my life (started drinking coffee as a teen to help with it), at first I didn't think anything about it. But when I failed to have a bowel movement for close to 10 days in a row, I knew I'm in some serious trouble.

And added to all that, my hair started to fall, more than the regular amount that everyone loses every day.

So I got on the internet and began researching for any commonality between these seemingly quite banal, normal and innocent symptoms. It didn't take me long until I found a very strong common thread: a thyroid problem called hypothyroidism.

The more I read about it, the more I started to believe that it is exactly what was happening to me. I was becoming 'hypo'.

During one of my regular visits to a pulmonologist who was treating me for chronic cough, we decided to have a general blood test done, afterall I haven't had that done in over a year, so it was high time. Among the list of things to test for, he also added two particular tests related to endocrinology, TSH and FT4.

Once my blood results came back, from the two test above (TSH was rather high and FT4 was rather low), it became clear that I developed hypothyroidism indeed, just as I suspected for quite a few moths already.

He gave me the number of an endocrinologist to have further tests done. I went to this specialized doctor, and without a word he prescribed me T4 in the form of some pills called Euthyrox (a name of thyroxine found mostly in Europe) and he made me an ultrasound where he discovered some nodules (largest of 1.2mm ), which later on proved to be Hurthle cells based on the FNA (biopsy) that was quite painful to go through. But on this, another time, since it's an ongoing issue that I'm dealing with as well.

In the meantime I went to another endocrinologist for a second opinion, who also made an ultrasound for checking on the Hurthle cells, and while discussing the issue of the thyroid nodule, he also ordered me a second set of blood tests for the hypothyroidism, which have to be done around 6-8 weeks once a person is put on thyroxine pills.

This time he ordered for me for early February:

FT4
TSH
and thyroid antibodies, which I've later learned that is to check for Hashimoto's disease, a very common illness in people with hypothyroidism.

Fast forward 1 month. I'm on Euthyrox, nothing is getting better, I still have the hypothyroidism symptoms, constipation, hair falling, total lack of energy, along with feeling really cold pretty much all the time (another very specific hypothyroidism symptom) and some other lingering symptoms.

At this point I decided to learn more about hypothyroidism and what treatment options I have, a journey that I want to document here for myself to see how/whether I improve and what really helps, and for anyone else going through the same things - hopefully this walk towards becoming healthy again will give the push to start taking the matters in your own hands as well.

I will try to document how I feel and what I do day by day, or if there is nothing to report, then at least a couple of times a week.